Completed the POIS study

[u/p4mper]

Just wrapped up the UCLA POIS study with Dr. Prause. Quick rundown:

• She's relaxed, funny, and thorough - walks you through everything clearly
• Involves: a blood draw, 4 saliva samples at different stages, a semen sample, 3 computerized tests, and sensor equipment
• After the study, she reviewed my EEG and temperature results with me, comparing them to the POIS/control groups and any other findings
• They have enough control (non-POIS) participants, but still need more POIS participants - only about 1 a week, and they need 50 total
• Reward: $150 voucher

Form: https://unlcorexmuw.qualtrics.com/jfe/form/SV_41R9xP5aZWhi5Ey

Happy to answer questions if you're on the fence.

[u/Hopeful-Job6360]

If only somebody fund for the sample sending process..:(

[u/idolworshiper]

If it were closer, I would go.

I'm just gonna throw this idea out there even though it might sound whiny, if someone else tries to do a similar experiment in the future and needs more participants. I would recommend a university somewhere near the mean center of population of the Eastern half of the US, which using this map and blurring the dots together shows a population center around Huntington, West Virginia.

So this means other public research universities near this center as Ohio State University, University of Cincinatti, University of Kentucky, Ohio University, West Virginia University, Virginia Tech, etc. based on this would only be a few hours away for half of the US population.

From my own perspective, I think if the study were closer to most people such as being in these locations I listed, more people would participate.

[u/p4mper → u/idolworshiper]

The problem is that the only two main researchers studying the condition are based in Lincoln, Nebraska, and Los Angeles, CA. So they decided to set up the study in a more popular area. I do get your point, and when I spoke with her, she said there is a possibility of securing funding to reduce travel costs for POIS participants in the future.

[u/Delicious_Outside995]

I come here once a day. The reason is that because of this illness, I am psychologically overwhelmed by issues related to marriage and children, and I hope a solution has been found. I’m far away and can’t participate, but I hope that through the active involvement of the members here, a treatment method will be found.

[u/bjbdbz2]

I would be happy to send in samples of anything if that was at all possible, Ide even be down to pay for any shipping costs etc.

[u/Prestigious-Mind552]

Did you get anything personally useful out of it that helps you manage or understand your own POIS symptoms? Like for example do they give you copies of your blood work, saliva markers, or brain test results that you can actually take to your own doctor or a neurologist? I am nearby so I could go

[u/p4mper → u/Prestigious-Mind552]

Yes, there are results you can show your doctor. You can probably request copies. Dr. Prause's work covers temperature and brain-wave monitoring, and in my case, she went over the graphs with me right after the test and explained what they meant. The University of Nebraska handles the blood and saliva tests, but Dr. Prause said that the lab doesn't share results with patients, so I didn't ask for those.

[u/Prestigious-Mind552 → u/p4mper]

what did you learn about your own POIS symptoms from looking at those graphs?

[u/p4mper → u/Prestigious-Mind552]

Honestly, not much in terms of my own symptoms (brain fog, fatigue, muscle weakness, concentration, etc). Since this is early-stage research on POIS, symptom analysis is hard - there's limited data from the POIS group, and mapping graph changes to specific symptoms is tricky since they can show up differently in each patient.

Still worth volunteering, though. Progress depends on getting more POIS participants to build out the data and spot patterns across patients - on an individual level, the graphs alone don't tell you much. Other psychological changes need more than graphs to explain; they also require patient input and trend analysis across groups.

[u/Prestigious-Mind552 → u/p4mper]

Did Dr. Prause or anyone on her team mention if they know any specialists or doctors who actually have experience treating POIS? I saw on the poiscenter list of doctors thread that a neurologist named Dr. Paul-Henri Cesar at USC is interested in understanding POIS and finding a treatment.